The Medical Model in 2013

For about the last month, I have been mysteriously ill.  I did everything I was supposed to do.  I checked my temperature, I evaluated my symptoms, I made doctor’s appointments, I got x-rays, I took medication, I adjusted my diet, and I kept up with my work obligations.  Doing what I am supposed to do is not unusual for me, but mysterious illness is very unusual at this point in my life with disability.  I am an expert in one body—my own.  However, when all outpatient resources failed, I went to the hospital, and there I stayed for five long days.

Hospitals and their staff are not set up for people with disabilities.  Seems odd, right?  It’s true though.  Disability is only magnified while hospitalized.  I remember the basics like needing a family member or regular caregiver to assist practically every detail of personal care, but the bigger, overarching messages of the ableist medical model slip my mind when I am not within the walls of a hospital.  I regularly guest lecture about disability and always begin by explaining the differences in the medical and social models of disability.  Sometimes, when I am discussing the medical model, I wonder if it really is outdated, and I imagine students must wonder this as well.  Then there are times, like when I was most recently hospitalized, when I have solid evidence that the medical model is alive and well in 2013.

As long as I am able to speak, I am very good at giving a medical history.  I can direct much of my own care.  As one of the paramedics said as she was getting me in the ambulance, “Most people with chronic illnesses and disabilities know their bodies very well.”  It’s true.  I don’t panic too much, at least not outwardly.  I know what’s up and I’ll tell you.  I can have a knowledgeable, intelligent conversation about medicine.  When deciding to admit me, the ER doctor said that I was a well-informed patient who’d done everything I’d been asked as an outpatient but was getting worse.  I might have been sent home otherwise (I’m still not sure that wasn’t the right course of action, but I digress.).  These are individuals who “got it.”

Enter the internal medicine doctor who decided to prescribe a couple of antibiotics.  When discussing one particular antibiotic with me, he assumed I’d taken it previously.  When I said I hadn’t, he was genuinely surprised.  No, permanent, long-term disability does not mean that I have taken most drugs.  It does not mean that I am regularly in poor health.

After the floor nurses learned that I am a part-time instructor at a university, that was the big news each shift.  This alone was pretty inconspicuous and actually led to nice conversations as some of the nurses had either graduated from our nursing program, were enrolled in the program, or had taken prerequisites for nursing programs at other schools.  The distinction appeared with questions of how I manage my bladder at work and if I need an assistant with me at work.  Actually, the only real assistance I need to do my job is someone to open and close the door to my classroom.  Other than that, the campus is accessible to me.  Outside of that hospital bed and room, I have negotiated my life so that I am able to do as much for myself as possible.  It is more than some people can do and less than others.

Finally, I received a call from a nurse case manager after I was discharged.  These are quite humorous to me because the case managers tend to find there is little to nothing for them to impart.  I’m not that smart, I’m really not, but I have found that in order to live as well as possible with disability, you must know as much as you can about your body and its needs.  This makes the call to me an easier one.  However, near the end of our call, the case manager said, “So, since you’re a quad, I’m assuming that you’re mostly bedbound?”  No, that would be very incorrect.  I informed him that I use a power wheelchair and am up for approximately 12 to 14 hours per day.

It’s hard not to sound defensive when answering questions like these.  The assumptions of dependence and inaction are more rampant that I’d like to think.  They are also diametrically opposed to what I experience when I am teaching.  My students expect nothing less of me than they expect of other instructors or professors.  Sometimes I wonder how to best answer these questions.  Do I state matter-of-factly, as I have done with this recent string that I do not need much assistance, that I am not living on antibiotics, that I do not need to be in bed all day, and just move on with the conversation?  Or do I muster the gumption to ask why they are asking their question?

I asked why someone asked me a question a few months ago and the answer was enlightening and infuriating.  A short-term caregiver seemed endlessly fascinated by my menstrual cycles.  No, it wasn’t the linking up of such cycles, but rather the fact that as a disabled woman, I actually have them.  Many, many caregivers over the years have been surprised that I menstruate, but none have been so endlessly vocal about it.  Finally, one day she asked “whether they ever thought about doing a hysterectomy.”  I explained I was only 10 years old when I was paralyzed and that there was no need to do any unnecessary surgery on any part of my body.  I was so enraged that I finally summoned the courage to question her question.  She said that she figures she’s had her children.  I understood.  I informed her that people with disabilities can have sex, enjoy sex, and their partners can enjoy sex with them.  I informed her that people with disabilities can have children and do have children.  I said, “I was only 10 years old when I became paralyzed.  Imagine that it was you, because it could have just as easily been you.  Would you not have wanted to be a mother?  Isn’t that a very important part of your identity?”

Disability and illness do not happen in a vacuum.  They can happen to anyone at any time.  We are not less human.  We are not here to fulfill tired, outdated assumptions.  I do not discourage questions, but I had hoped that medical professionals, having actual medical knowledge, would make fewer assumptions about limitations.  This is not the first time I have written about the medical system’s shortcomings, and it probably won’t be the last, but it serves as a reminder that assumptions must be challenged for change to occur.

Unruly

Picture it.  My place.  February 17th, 7:00pm.  Take out Mellow Mushroom create your own salad: spinach, artichoke hearts, sun-dried tomatoes, and broccoli.  So begins the descent into my first bout of food poisoning.  Stomach distended, non-stop vomiting, bladder shut down.  By something like 2:00am I’m on my way—via ambulance—to Piedmont Hospital.  Emergency room.  Magical anti-nausea drug administered intravenously and I’m feeling a little better.  Instantly.  It’s that good.

My dad is with me.  My mother is scheduled to return home from working at my Grandma’s house the following day, or by that point, the same day.  I give my history to countless medical personnel about a gazillion times.  Dad is helpful but sleepy and antsy.  High energy and exhausting is his normal state.  This is some exhausted version of that.  I love my dad, I really do, but when your body is in crisis, a calming force is preferred.

After getting settled with the anti-nausea med, IV fluids, and registration, we waited on X-ray.  We waited, and waited, and waited.  The computers were down.  Service was slow.  X-ray came.  Paralysis and X-ray suck.  I won’t sugarcoat it for y’all.  They suck even more when your stomach is far larger than usual, you have IVs and some damn telemetry monitor I still don’t know why I needed, and so on.  Enter Dad’s talents.  He helps lift me with the X-ray dude, who, and I say this as someone who does and does not feel 32, was younger than me, a young dude.  Not very talkative either, which is always rather awkward because my dad wouldn’t stop talking if you shot him with a tranquilizer gun.  But it was the night shift.  You can’t expect those guys to be chatterboxes.  (And, truthfully, I’d rather not be gabbing at 4:30 in the morning with almost anyone unless I’m bored out of my gourd.)

Now it’s time for a CT scan, the CAT scan.  Whatever.  I watch a lot of Grey’s Anatomy and Private Practice.  I call ‘em CTs.  So, when you have an unruly gut like I do, you learn the tricks of the trade.  You learn to refuse to do certain things.  Even when you were, at least subliminally, taught to be a good Southern girl and do what you’re told.  Even when you are not the most assertive person in the world.  Even when you’d rather listen to death metal music than have someone give you a disappointed and disapproving look.  Well, maybe not death metal – I listen to Streisand, for crying out loud, but you get my drift.  Anyway, when you have an unruly gut and then your unruly gut is the reason for the CT, the powers that be – radiologists and ER docs in this case, will want you to drink some damned chalky mess so they can get this supposedly fantastic picture of your unruly gut.  (I did mention I have an unruly gut, didn’t I?  I have gastroparesis, which basically means that my gut is paralyzed, so I do not exaggerate when I say this.  It takes me longer than you could imagine to digest food, not to mention a slew of other mess that comes along with this particular diagnosis.  More on this all soon, I promise.)  So drinking this chalky crud is a nice idea and all, but when your gut is unruly on even your best day, you sure as hell don’t need to be drinking this mess when your gut’s at war with the rest of you.  So I refused.  Got the disapproving look and the explanation of why I should drink it.  We went back and forth and I gave my counterpoint.  Dad swooped in finally and told radiology man to check with the doctor.  Doctor agreed with me.  Thank you.  That’s all I really wanted.  They were going to inject me with some dye anyway that would show them enough, or as much as they were going to reliably see given that if I had actually attempted to drink the chalky mess I would have been in far worse shape than I was before the chalky crud.  This is not opinion or conjecture.  This is fact.  A gastroenterologist stated as much a few hours later without me even broaching the topic.

Now, I am fully aware that many people do not possess as much knowledge as I do about my body.  I’m also aware that some people may think they know things that are actually incorrect.  I just wish that the assumption landed in my favor and not the reverse.  But I’ve watched enough episodes of House, M.D. to know that patients lie and/or are misinformed.  (But, but, but I’m smarter than they are! I actually am, ya know.)

Not long after the CT, the ER doc came in and broke the news to me…which wasn’t news to me but rather a foregone conclusion I’d recognized before I’d even left for the hospital (which is why I delayed the trip as long as possible, an ironic new development in my veteran crip chick identity).  I’d need to be admitted and would need an NG tube, a nasogastric tube, a lovely, giant plastic tube that a nurse would soon shove down my nose and into my stomach, to empty out all the mess from my gut.  I assured her I wasn’t surprised and knew the drill, although it had been about 17 years since I’d been party to such excitement.  She said I shouldn’t have to be familiar with such things at my age.  Illness knows nothing of age.

I exaggerate in life sometimes.  We all do.  But I do not exaggerate at all when I state my hatred of NG tubes.  Before my evil gut issues were diagnosed, I was in and out of hospitals for weeks at a time with NG tubes a regular occurrence.  They are horrible.  Inserting them is painful enough, but that’s only the beginning.  It is nearly impossible to speak or swallow while there is a giant plastic tube down your nose, going through your throat, and into your gut.  I don’t chatter as much as my father, but I can hold my own in a conversation.  The NG tube will shut me up instantly.

They didn’t have small sized tubes, so I got the big momma.  I’m a tiny person, so it was a struggle to shove that sucker in, but we had success.  For the next 24 hours or so, I moaned and groaned but barely spoke.  As luck would have it, all of the doctors decided to come in after the tube was placed and while my dad took a break to go wander around outside.  I really don’t cry much in life, not in many years have I been a sobbing mess of goo.  But that day, when trying to give my history again to a hospital doc, a general surgeon, and the on-call gastroenterologist in the practice I’ve trusted since 1995, I wanted to cry.  (You can imagine crying is not the best option with a giant tube shoved down your nose though.)  Instead, I managed to speak intelligently about my situation, while gagging every so often.  I am immensely grateful for the understanding doctors who exercised such patience as I struggled to explain what was happening.

The docs informed me that I had two liters of fluid in my gut and the tube would help empty that.  I had a blockage that was slowing everything.  They hoped I wouldn’t need surgery but consulted a surgeon just in case.  They did more tests that day to see how much the blockage could be solved without surgery.  This meant more and more moving, all the while with that damn tube and my moaning and groaning.  But my calming force entered just in time.  Mom made it back to town.  Dad went home to sleep.  Fourteen hours after getting to the ER I was admitted to a room on the floor.

I’ve explained before that I had surgery 14 years ago that enlarged and re-routed my bladder such that I can catheterize independently when I am in my chair.  It’s amazing and has afforded me more freedom than I could have imagined otherwise.  But, in order to enlarge and re-route the bladder, the urologist used part of my intestine.  Long story short, my gut and bladder are inextricably linked.  This means that when the staff tested a urine sample, it showed a urinary tract infection (UTI).  Not surprising in the least.  The surprising part came when the doctors could not explain why I had this blockage.  They latched onto the UTI because it has a “cure.”   I’ve also explained before that after nearly 22 years of catheterizing, there will always be bacteria swimming around in my urine.  It’s a fact.  Enter the linked gut and bladder and there really will be some scary critters setting up shop in my urine sample, just to screw with the medical establishment.  You know those commercials for pharmaceuticals that tell you each and every side effect of whatever they’re trying to get you to buy while providing some sort of informed consent and simultaneously praying you’ll still want to medicate yourself?  They sometimes state that the benefits outweigh the risks associated with the drugs.  That’s kind of how major disability and/or illness work.  The bladder surgery solved some problems and it caused some problems, but the benefits outweighed the risks.  The trick is being informed and using whatever intelligence you have to manage your body as well as possible.  I eat healthy and drink more water than your average bear.  And I only treat urinary issues with antibiotics when absolutely necessary.  Antibiotics are wonderful, but a steady diet of them invites more problems than solutions.

So the docs focused on the UTI as the root cause and problem to solve.  Forget the spinach that was very likely contaminated and that revolted against me.  Forget that had they not taken a urine sample I would have had no symptoms of infection.  Forget that I will always have critters hanging out in my bladder.  They even brought in an infection disease doc.  I’d worked with him in 2007 when I had a freak bought with MRSA and sepsis, a scary story for another day.  He’s very intelligent, genuinely concerned, and he—along with all of the other doctors during that stay, treated me like an intelligent adult.  But he wasn’t looking at the whole picture, and I was too weak to do so.  It wasn’t until a couple of weeks later that I could put it all together and recognize that there was no cause for alarm.  Bottom line: I have gastroparesis that is managed pretty well with medication, strict adherence to a healthy diet, and a schedule.  However, such a difficult digestive issue means that any foreign invaders, like food poisoning, will cause significant distress and intervention in the form of at least an NG tube and hospitalization.

That’s my story and I’m stickin’ to it.  Smart people will tell you they learn something new every day.  Sometimes I learn a new version of the same lesson periodically.  I keep learning that I know more than I think I know and that I am the expert on one person—me.  It’s not always easy to sort out the pieces of the puzzle to make sense of our unruly bodies, but trusting ourselves is step one.  A couple of months after my hospitalization, I updated my fantastic urologist during my annual visit.  She supported my hypothesis and said she’d explain everything to the infectious disease doc.  If I’m ever in for food poisoning or some other nonsense again, she’s definitely on the consult list if my own expertise is questioned.

Those two liters of fluid in my gut manifested into what I called my demon baby, tree trunk thighs, and cankles.  Over the next couple of weeks after I was discharged from the hospital I lost that demon child, those tree trunk thighs, and cankles.  I really should have taken a picture; I’ll never have that much body weight naturally!  While I waited impatiently for the NG tube to be removed (about 24 hours or so), I dreamed of glasses of ice water, cucumbers, pitchers of water with raspberries floating in them (in the spirit of a hilarious episode of Grey’s Anatomy).   I returned home and the next morning I enjoyed a long, hot shower and washed my hair three times.  Three days in the hospital will wreak havoc on your vanity.  Actually, three minutes will do almost as much as three months will.

I haven’t been able to stomach a spinach salad or artichoke hearts in a salad yet.  I’ve eaten them cooked, so I’m getting there.  Artichoke hearts aren’t entirely necessary for nutrition, but spinach is super important.  Here’s hoping.

Synthesis

My grandmother passed away very late at night on September 25, 2011. My grandma was an awesome woman who occasionally made me want to scream, and I was occasionally the heavy with her in the past few years. I came into my identity as a hard ass crip chick and she became more and more stubborn. We were deathly ill at the same time and then we had significant needs at the same time. There was not often enough of my mother to go around as she is an only child. My grandmother had help and love from other family members and friends, and I could not be any more grateful, but we had some rough moments. We also had some great moments. She would usually stay with me while my parents would go on long trips out of town. Grandma loved seafood almost as much as I, could make a fantastic hamburger, and she loved my golden retriever Jenny and always made sure she was well cared for. We would go to the movies, shopping, and out to eat. We would sit on the back deck enjoying the summer air. She would ask me, repeatedly, to tell her the name of the class I was teaching, or what my thesis was about, or the latest news on my friends and caregivers and co-workers – former and current. She would tell me all about her friends’ goings-on. I called her every Sunday afternoon to check in. If I forgot, got caught up, or was a little late, she would call me. Her friends knew more about me than I probably tell most people, but that was Grandma. She did love to talk, in person or on the phone. So at her visitation and funeral, I did my only granddaughter thing and chatted with her friends. She was a popular woman, there is no doubt.

I also chatted with some of my parents’ friends, people who have known me my entire life. On the drive from Marietta to my grandmother’s family home in an incredibly small town outside of Savannah, I thought, for maybe the first time in a long while, about the people in my life who have known me forever and the people who have known me for a little less time. How are those relationships different? What about the people who knew me pre-paralysis and post-paralysis? What about the people who have only known me as Laura, the chick in the chair? They do not necessarily know less of me—they may, in fact, know more. But they don’t know it all. But neither do the forever folks, if only because they see me far less than the newer folks.

These thoughts did not stay with me too long. I was rather busy. However, after the visitation my father told me that a couple of his and my mother’s friends had found some old home movies of me and their daughter when we were small and worried whether it would be okay to share them with us, whether we would be all right to view me pre-paralysis. My dad assured them it would. Little did most folks know at the time that just one day after my grandmother’s funeral would be the 21st anniversary of the onset of my paralysis. It was actually a busy week of these special days because my other grandmother’s birthday was the 28th (who passed a few years ago), the day of Grandma’s visitation. October 1st was my great-grandmother’s birthday (who lived to be just a few months shy of 100, passing when I was 23) and her son, my grandfather’s, birthday was October 2nd (who passed many years ago), with my father’s birthday rounding us out on October 6th (he’s still truckin’).

I have gone through many phases of my reactions and approaches to disability, as I imagine most people have. However, I have never been averse to reminiscing or seeing pictures of my body pre-paralysis. The depth to which I share my feelings is not equal for all who may join in these endeavors, but it is never a sad or distressful occasion. While at my grandmother’s home, we found some old home movies of us as kids, with pre-paralysis and post-paralysis videos. I’m rather partial to the pre-paralysis shots because, although they do highlight my obnoxious first child personality of the late ’80s, they were fun and they remind me of a time when I was free and innocent. The next few years’ videos, which document the first few years of my body and personality post-paralysis, are difficult to watch for reasons nearly too numerous to recount. The most prominent reason, though, is that I had lost a lot of weight and had not yet mastered wearing clothes that, at least from my vantage point, accentuated the positive and downplayed what I believed and society has deemed, less attractive. My wheelchairs were giant and I needed more accoutrements than I have used in quite some years. Yes, my name is Laura and I have internalized ableism. I was weak and unaccustomed to this new form of my body. I seemed younger in this huge wheelchair than I did only months or years before. I was still cute though. I still had childish thoughts and interests and acted like I was 11 years old. But I looked fragile and awkward, and I still would rather not see myself this way, at least not with others in my presence.

We watched a few of the old home movies on Christmas night. The original purpose was to see all the cute things my youngest brother, Edward, said and did when he was a small one. When we started watching, though, my social media brain began twitching to my fingers and snapping photos of paused shots of my family, those that would be the most fun to share on Facebook. My favorite is of me riding my bike. I had a deep and abiding love for riding my bicycle anywhere and everywhere I was allowed. This originally only included the street in front of our Savannah home and then extended further and further. Given that I have almost no sense of direction and an (un)healthy dose of fear, I kept closer to home than most kids might have, but I was relentlessly happy to ride and ride and ride and ride.

I posted the pictures to Facebook and had a blast. So very many good memories. Then I recalled my thoughts on the way to Grandma’s services and afterward. Who among the people in my life that have only known me post-paralysis know much about my life pre-paralysis? I can think of but two people with whom I have really, really talked about that time, only two people who have been inquisitive enough to seek my past and cherish it with me.

I recognize and affirm that life does not fit into such dichotomous boxes as pre- and post-paralysis. I have plenty of people in my life who have known me for many years and have significant overlap. Each person, no matter where they fall on the continuum of my life’s timeline, is important to my story. But there is this past, this person I once was, who has differences and similarities to the person I have become.

When disability was new to me and those in my life, it was often the center of my thoughts, curiosities, and emotions. Then I moved to a new city, almost 300 miles away from my home, from the people who had always known me. Things changed. I was suddenly always crip chick in the chair. My past was mine and not important to the new scene. No one had to process anything. Fewer people in general were curious about disability in this new place and I was glad. It had been a negative in the old place and in the new place it was an accessory, part of me but not all of me.

A week or so ago, I heard Sonny and Cher’s “I Got You Babe” on the radio and it reminded me of another song that is rarely played but that I love far more, “Baby Don’t Go.” I have been playing it incessantly since I purchased it on iTunes, especially as I have mulled over this post. The lines that seemed to inspire a breakthrough for me:

“When I get to the city

My tears will all be dried

My eyes will look so pretty

No one’s gonna know I cried

Yes I’m goin’ away

Maybe I’ll be back someday”

When I moved from Savannah to Marietta, I’d cried many tears and hoped they would subside in a new place with new people. It took a couple of more years, a strong will, quite a bit of self-confidence, and then no one knew I cried. But, now I wonder, what’s so bad about people knowing you cried? Truth is synthesis, not compartmentalization.

Happy New Year!

I have not posted in several months, but fear not, I am well and busy teaching.  I have at least one post I am itching to write, but it will have to wait a bit longer.  In the meantime, I encourage you to read two new posts from my dear friend, Alida Brill.  The first, about the new year, is so appropriate for all of us.  The second is the first in her series of posts titled, “Notes From The Infusion Room,” and is one of the most honest pieces of writing I have read.  Savor them.  Comment on them to show your support.  Share them.  Remember them.  Live them.

Regurgitation

Lately, I have felt silenced and trapped.  Indeed, I realize now that these are feelings that I have long had but only in the past few years have I felt empowered and knowledgable enough to release them. However, I cannot – at this time anyway – write the words and expose my truth in its pure, unadulterated form. It will take time and the right format for that. But I want – I feel I must – expose the very real emotional pain I have experienced as of late. I must make my reality a spotlight because that is what I have promised to do with this website – present my views and experiences of what it means to survive, thrive, and be real with disability. Living with disability entails a certain amount of silencing of our realities because to fully present these realities is not always safe, for all sorts of reasons. Sometimes, even though we cannot safely tell the details of the stories that would most clearly illustrate our pain, we must still express that pain – to release it, to spew forth the hurt, to acknowledge the truth and break the silence, if only partially, to take the power away from the pain and give it back to ourselves…again, if only partially. So I have chosen a slightly different medium and manner in which to present the feelings and experiences of my reality.

The video is embedded below, but if you cannot view it, please view it on YouTube here. Because the video is silent, other than the music that accompanies it, I have included a textual description below the embedded video.

In the video, I am flipping pages of a pad of paper with the following words written on them:

“Regurgitation” by Laura Overstreet

Ableism is…

Silencing…

Minimizing…

Dis-empowering…

Invisibility…

Burden…

FEAR…

Sympathy…

Pity…

Entitlement (of the able)…

Self-centeredness…

Inequality…

Unrealistic expectations…

WE are… SCREAMING inside

Invisible

Silently aching

Discouraged from exposing our truths

Negated & Denied

SO scared

Feared

Trapped, bound

Burdensome

Not acknowledged

WE are BEAUTIFUL.

But do YOU know it?

Do YOU silence US?

Do YOU rob US of control?

We are NOT the same

That’s OK

YOU could be US someday

Acknowledge difference

and power differences.

Witness OUR pain & truths

WE will witness YOURS.

And the dance continues

I love TV. I always have. Instead of taking naps with my mom and brother when I was little, I used that time for watching soap operas. That’s right. I started at 3 years old watching All My Children, One Life To Live, and Guiding Light on a little black and white TV with a couple of knobs to change channels and adjust the volume. I pretended to be the characters and learned all about kissing and romance and underground worlds and multiple personalities and strong matriarchal women, because, while soaps may be based on far more drama than happens in your average person’s life, they are also rooted in strong women. As I got older my loyalty to soaps waxed and waned, but I held fast to my favorite, and certainly the most progressive soap, One Life To Live. Soaps tackle social issues, and you might say I got my first exposure to social justice through One Life To Live.

Through the years my loyalty to TV has ebbed and flowed, especially depending on how much school work or work-work I was doing. A few years ago, I reclaimed and rediscovered a comfort in TV while going through seemingly endless disability trials. I couldn’t seem to focus on it during hospital stays, but while at home I found that TV was an escape, a comfort in times where I had little control over my life and body, and at a time when a large portion of my time was spent in bed. Given different working muscles and body parts or the ability to sit up in bed instead of lying flat or on my side, I would have read and read and read, highlighting and making notes along the way, perhaps writing a better Master’s thesis than even I could have dreamt. No such luck though, so I watched TV. I became engrossed in stories, in characters, in the dependability of it all, in the escape it provided while biding time, in the comfort it provided when I would awaken in the middle of the night with thoughts of terror racing through my already traumatized psyche. All I had to do was turn on my television, flip through the endless channels and a favorite movie was sure to be playing or reruns of some silly sitcom, anything to quiet my mind from the fears about which I could do very little. As things have changed in my life, I have let go of some of the shows I used to watch, but I still have a few that grab my attention each week. And, for as long as I can, I’ll keep up with my remaining soap, One Life To Live. Sometimes coping mechanisms are just within our reach.

A couple of years ago, I started watching Grey’s Anatomy. I’d seen a couple of episodes previously but had not gotten into it until I learned about some of the storylines from a caregiver. Then I was hooked and caught up on all of the past episodes pretty quickly during the  summer and while resting and fighting a lingering cold. Last night’s episode was a musical episode. This could have been a really poor excuse for experimentation, and I’m aware some think it was a bad idea, but I LOVED it. I loved everything about it.

The episode picked up from the end of last week’s cliffhanger where two of the characters (both surgeons and regular cast members) were in a car crash. One of them turned out okay, but the other was not wearing her seatbelt and was thrown through the windshield of the car landing on the hood. Did I mention she was pregnant? She was rushed to the hospital, and the rest of the episode showed the surgeons working on her while an image of herself sang and many of the other doctors sang. I know, it seems very corny, but it touched me on a deeper level than even I, self-professed soap opera and TV lover, could have expected. From the beginning I started crying and I only briefly stopped for moments all the way through to the end. I spent many years crying over this or that or for reasons I didn’t even understand, mainly related to sudden disability at a formative age and all that being different at those ages brings with it. All of the adjustment and uncertainty and fear and illness that such a drastic change brings with it were my reasons to cry. And then the crying (largely) stopped. I changed and my life changed, and crying, almost unconsciously, became reserved for the TV episodes and movies that moved me and took me to a place where they opened up my soul and created a sacred safe space to feel and own those emotions. I cried last night for all of us who go through these crises with our fragile bodies.

The music that the woman who was in the accident (Callie Torres, played by the amazing Sara Ramirez) sang and the other doctors sang was a comfort, a processing, a way to work through the fear and pain and trauma and terror of such a horrific situation. The music, and the feelings that the lyrics conveyed, were the heart of the episode. The other voices around each character who sang fell silent or barely audible until all you could hear was their own voice, their own pain, fear, and need for comfort. They utilized music in such a special way that comforted, consoled, gave strength and clarity and calm and resolve to everyone involved, including the viewers, the audience. Those of us who have been through trauma and the medical system know these fears all too well. We know how disconnected we can feel from our bodies, how cold and impersonal doctors and other medical staff can be, and how scared and alone we feel in these situations, in these times.

Each of the songs these characters sang touched a special place and reached far beyond that moment or that feeling and brought out the losses and fears and yearnings that are unique to such a crisis, which can be felt in all of us. Whether it’s the car crash that put us and our baby in jeopardy, or the surgery for a pressure sore and infections and blood clots and foreign objects inserted into our bodies when we feel dreadfully alone and scared beyond words, or the latest treatment for our chronic illness that instead of giving relief rips our body in parts we never knew, or the loss of a love that was so special but forbidden by some force we cannot fight, or the waiting patiently and impatiently hoping against all hope and bargaining with all that we have for just one more moment, one more day, or even the gradual but horrid awareness of a painful reality of that which changes us in ways we cannot begin to explain to those who are not part of our crip community.

And the music moves us and holds us close and stops us cold and keeps us feeling…despite and in spite of and because of it all. And it heals us. And it opens old wounds. And the dance continues.

P.S. You can watch the episode online here.

Sometimes you need a little help, sometimes you’re tired

In my regular presentations and discussions about disability awareness to college students, I am often asked about the best ways to help a person with a disability or to ask if we need help.  Occasionally, parents are looking for ways to help their children talk to other children or adults with disabilities.  I usually tell students that a good rule of thumb is to allow the person with a disability to ask for help if it is needed, because we usually know when, what kind, and how much help we need.  We are also better equipped to direct the helper on how best to assist us.  I then explain that generally well-meaning nondisabled individuals tend to help when it is not needed, in ways that are not at all helpful or harmful at worst.  There are certainly all kinds of issues of power, infantilization of the disabled person, stigma and stereotypes, and a whole host of more issues involved in these sorts of exchanges, but that discussion is longer than a single blog post.

We, as people with disabilities, are able to do all sorts of things for ourselves, and when we cannot, depending on where we are in our journey in life, we are capable of asking for help and knowing what we need.  Then there are the other times, the times when we may need something from someone else but may not know exactly what, when, or how to best accomplish a given task.  Then there are other times when we are just plain old tired.  I’m sort of in that part of my journey these days.  I know I need help, sometimes more and sometimes less, but sometimes I get tired of asking.  Or I’m feeling shy.

I decided yesterday afternoon that I wanted sushi for dinner.  I’d been craving it for a while, and although I’m Irish and it was St. Patrick’s Day, I really wanted sushi.  So, I got in my van and drove up to my handy dandy neighborhood Publix grocery store.  It’s not the best sushi in the world, but it’s fast and easy and works for me in a pinch.  As I rolled into the store, I went over to the sushi display and had a Pavlovian response to the beautiful and colorful choices that awaited me.  I quickly saw what I wanted, but I knew I couldn’t reach it, and I really couldn’t reach the chopsticks and soy sauce.  The store was busy, and the sushi display is up at the front of the store where shoppers hurriedly enter and exit.  I glanced around sheepishly, waiting for the right person to ask to grab my dinner treat.  I hesitated.  At best I am not a crowd person, at worst I’m a tad claustrophobic; wheelchair life will do this to you, always being so aware of your body and other people’s bodies moving through space.  I am usually more than ready to ask for assistance, but I’m tired and there are people whizzing back and forth all around me.  Finally, a woman approaches and asks, “Can I help you get something?”  I replied in my smiling voice, “Yes, that would be wonderful,” and told her my selection and then asked if she could also get chopsticks and soy sauce.  She grabbed two pairs of chopsticks and several packets of soy sauce (I’m pretty sure she was a mom, thus understood that more is more – and better).  She even checked the “sell by” date for me (I’d already seen it, but you never know).

The whole help thing is very individualized, unique.  I rarely encounter someone attempting to help me in a way that is harmful or not what I actually need, but I am well aware that my experience is not the mainstream experience.  And I’m usually very good at asking for help, and if something will not work the way that someone else is asking to do it, I’m pretty good at explaining why not so that the individual does not think I am just being mean.  People want to understand and make sense of things, and I get that.  (People do try to tell me I can do things I cannot, or at least assume I can do them, but again, that’s another blog post.)

The woman who helped me yesterday did so in a way that worked for both of us.  She asked politely and I accepted and gave clear direction and thanked her.  This is not really a new, different, or exceptional instance.  But it bears witness to the people who want to help but who are afraid to say the wrong thing, get involved in a situation they cannot handle, or simply just don’t know what to do.  And it bears witness to those of us with disabilities who have our own lives outside of the public persona we feel we must present or feel burdensome by asking for help on a regular basis.  It’s a difficult dance for all involved.  I have recently been feeling overwhelmed by my life lived with disability.  Actually, overwhelmed is putting it rather mildly.  Lately, I feel like my life is consumed by the stuff of disability and there is little room for anything else.  Part of that is my own doing because I have chosen to make disability my work.  The other part of it is just reality, and contrary to the proliferation of “reality” TV that makes “reality” seem entertaining, real reality is pretty hard stuff.  Disability multiplies that to some power I’m not even sure we can count, so I’ll go with my usual saying, the nth degree (reach far back in your minds to high school algebra!).  I’m tired, folks.  I’m tired of talking about the ins and outs of my body and my needs with people, over and over again because everyone needs to hear it, from the big stuff to the mundane.  I’m tired of my body and needs taking center stage.  I’m tired of explaining to people, new and old.  I’m tired of feeling like the different one.  I’m tired of feeling tired and tired of worrying about it all.  It’s strange to feel this way and be so young.  Who knew 31 years could feel like such a long time?  But when you’re in your 21st year of disability but only your 32nd year of life, I imagine that’s what you get.  The lady who helped me yesterday did more than reach some sushi, soy sauce, and chopsticks for me; she gave me a tiny break from making the first move, from being on display.  Sometimes we just want to grab what we came for and be on our way.  Sometimes we just want to be, not the supercrip, not angry or sad, not fighting “the man” or explaining to others or defending ourselves, we just want to be.

So that’s where I am.  Just trying to get through each day without tipping the scale past the tired breaking point into oblivion and evil.  Trying to find my way back to thriving amidst the survival and being real with disability.  Trying to find the balance among those three things.  I’m starting to learn that sometimes two out of three ain’t bad.

In other news, I have a few recommendations.  My friend and author extraordinaire, Alida Brill, has a new blog called From This Terrace.  She has been chronicling her observations and musings from her New York City apartment since the beginning of the year and does a weekly installment.  I reviewed Alida’s book, Dancing at the River’s Edge, last year. Be sure to check out this amazing book about her life lived with chronic illness and be sure to keep up with From This Terrace at the blog and via its Facebook page and Twitter page!

Another friend and author extraordinaire, Rachel Simon, has a new novel, The Story of Beautiful Girl, being released May 4th – be sure to pre-order your copy via the link!  She has had fantastic success thus far before most people have even gotten to read it, with her publisher sending her on an exciting pre-sale tour.  She has been blogging about this wonderful experience, and it has been so much fun to get this inside look at the publishing world.  Rachel and her books have already done wonderful things for the disability community and I know this book will do even more.  Also, be sure to read my interview with Rachel about her second memoir, The House on Teacher’s Lane, here.

Year’s end, semester’s end

My first semester of teaching has reached its end. I have spent the last week in something of a fog of mindless activities, largely coming off of such a mindful few months. I have learned, and will continue to learn, that new chapters in the books of our lives hardly turn out to be what they seem while in anticipation of their arrival. When I began graduate school I was overwhelmed by the amount of time it took to read all that was expected of me, and that says nothing of the amount of time it took to process and synthesize such complex information. The same thing happened with teaching. I am not unintelligent, but I am inexperienced. I sure learned through a trial by fire! My final analysis is that there were challenging and rewarding moments and students, and many lessons learned.

College has changed quite a bit since I was a student, and I am not sure I was prepared for how much it has changed, but I am now and have learned ways to work with these changes next time. During the semester, I changed methods, tried new approaches, and opened my mind. Then, near the end during massive grading, I made notes of all kinds of things to do differently to (hopefully) facilitate more engaged learning in the future. And, overall, my students did well, and I learned the concepts that appeared most difficult for them so that I can focus more on those (because they are rather important concepts) next time. Oh, and I griped some too, because what is a new and challenging experience without some griping to the people who care?

In the end, though, I cannot help but smile when I remember the students who read about people with disabilities and changed how they viewed us, or changed the language they use, or looked at new perspectives and grappled with long held opinions, or simply related what we learned in class to their own lives, understanding that knowledge is life. This course is not just another course; it is about our lives, whether my students were human services majors or not, they learned many new ways of looking at their lives and the world around them. At least that is what they wrote in their last essay when I asked about the most important things they learned during the semester!

Now the holiday season is upon us, and I write this blog while listening to my favorite Christmas songs and avoiding slogging through TONS of emails that have gone unread during the past couple of months. I have learned another thing this semester: I have horrible time management skills…or too many interests! Or maybe the demands of my disabled body take away some of the time I would otherwise spend on those tasks that the able folks take for granted. It is most likely a lovely combination of all three! Anyhow, I must return to some semblance of a schedule soon if for no other reason than to have that inbox number stop climbing to the highest heights. I will not teach next semester but will spend that time writing, writing, reading, writing, and reading…and hopefully a little speaking to keep me in the habit before I return to teaching in the summer if all goes according to plan.

When I look back on what the semester and year have meant to me though, outside of the technicalities of teaching, I recall a few special memories and lessons. My overarching theme this year has been thriving. Indeed, I can only hope that is my overarching theme for many years to come. I have spent this year reaching out, from writing, to reading, to teaching. One of the many themes common to life lived with disability is that of struggling to feel like an adult when the world deems our lives and needs as those of children. When I took the class that I taught, I had my first work-related experience in the form of an internship at a local hospital. I recall being surprised when visitors would ask me for directions to an area of the hospital, surprised that they deemed me worthy of providing an answer to their question, however simple. So often, we as disabled folks are the recipients of services and information. Being on the other end of such an exchange was a small moment of empowerment that has stayed with me for many years.

That feeling followed me this semester into teaching. Yes, the semester was filled with missteps, just as that internship was, but it was also filled with first steps and empowering moments. These students were not – at least not obviously – daunted by my disability status. I gave examples of disability-related issues, both personal and otherwise, and they appeared interested. When we got to the final chapter on social movements, there was a graphic in the text depicting different cultural frames (slogans) for social movements. A student asked what “Piss on Pity” meant. I discussed the problems surrounding the Jerry Lewis and MDA telethon! It just might be one of my favorite moments. Better yet, then they were able to understand some of this in a historical context such that Jerry Lewis is not exactly keeping up with the times, so to speak!

Another favorite moment occurred in the elevator one day on the way to class. I got in with two other people. They asked what floor I wanted, I answered, and one of them asked if I was going to Professor so-and-so’s class, to which I smilingly replied, “No, I’m going to Professor Overstreet’s class, my class.” The gentleman smiled and asked what I was teaching, and I told him I was teaching a class on human behavior, at which point we arrived at our floor and I rolled out as he said, laughingly, “You don’t look old enough!” I laughed as well, and said, “Thanks!” The subtext of this discussion was that he never pictured a professor who was also a wheelchair user. It was funny and fun. I imagine he never would have guessed I was 30 either, or drove a vehicle, or had sex, or any number of other “normal” activities. I was not offended but flattered and glad that I changed the picture in his head that day, even if he really did simply think I looked too young.

These examples and points, then, are the subtext of my first semester teaching – the times when I changed the pictures in my head and others changed the pictures in their heads. They are also the subtext of my year outside of teaching, the time I have spent moving on from the mere survival and mess of late 2006 through late 2009 to the thriving and emergence of a new and improved me throughout 2010. The next year is sure to bring new lessons and more ways to continue on the new and improved path, and while I will undoubtedly falter along the way, I will keep trying.

Happy Holidays to all!

Twenty/20

“Twenty/20″

I like numbers. I like what they tell us, what they signify, their symmetry, and how they have occupied my time over the years. Dates and anniversaries are the epitome of the power of numbers for me. I’m one of those people who can tell you the dates of almost any significant thing that has happened in my life, and even some of the not so significant things, or at least they are not traditionally significant dates but are mostly important emotional dates for me. I started playing with numbers in my room many years ago when I was very ill. I could barely keep ice chips down and needed distractions. The digital clock provided a quick answer. I arranged the numbers to get to the lowest number to which they could all add. If it was 11:24, I would take the first two numbers and add them giving me 224. Then I added the first two remaining numbers to get 44, and finally I was left with 8. Eventually, I realized that 9 was a significant number. For instance, if it was 9:21, I would get 111, then 21, and then 3, such that if 9 was included in a combination, whatever numbers besides 9 added up to the final number. Even if it was 8:21, I got 101 and then 11, and finally, 2 because 8 and 1 added up to 9. Get it? Good. It was pretty fun for a nerd like me. I alphabetized the letters of words in my head as well. I still do this. I used to like it when they came out with an even numbers of letters, but now I prefer there to be a flow of letters rather than a specific number. This one is much harder to explain in writing, so I’ll leave you with the simple understanding that numbers, symmetry, and significance are very important in my mind, heart, and soul.

Before my number and letter tricks, though, came a couple of significant dates that have followed me for 20 years now. Today, September 30, 2010, marks the 20th anniversary of the onset of my paralysis due to transverse myelitis (TM). It is beyond significant to me. My life and my family’s lives changed in a matter of hours, or minutes really. The dull back pain that held on for a couple of hours changed within seconds to excruciating and then within a few more seconds faded into numbness and tingling and a few minutes later into paralysis. Twenty-three days later, on October 22, 1990, I was admitted to Shepherd Center for over three months of rehabilitation.

Many anniversaries have passed through the years. Many have been insignificant. Not that I have ever forgotten them – I never forget, even if I never say a word about them, I always remember. It’s my thing, the dates and anniversaries and numbers. I wonder about the people who do not remember the date of their injury or sudden onset of disability. I have been asked by medical personnel many times for my date of injury. I always know it, and I always clarify that it is a date of onset of transverse myelitis. It’s kind of fun, in a strange way, to be the outlier. I have plenty of experience being an outlier. TM was not my first and it certainly hasn’t been my last.

My thirteenth anniversary was significant, probably the first special anniversary. I had just graduated from college a few months prior and had unmasked myself in ways I never thought possible. I was scared and felt safe to confess my fears, my young misgivings about life as a disabled adult unsure of almost anything, unsure for the first time in a long time and unavoidably confronting adulthood for the first time. I had just started a very part-time job and had lots and lots of time on my hands to ponder my identity and my future. College had been a five-year high, but what came later was a roller coaster of unresolved and newly appearing issues. My emotions ran high, and it seemed okay to talk about my anniversary and my reality of disability for the first time. It was the beginning of my disabled identity, even though I didn’t know it at the time.

My seventeenth anniversary was filled with anger. Disability had again figured prominently in my life but in a wholly negative and terrorizing manner. I was low, had been pushed and shoved over and over again too far down underground, in a deep hole, tired of fighting to climb up just far enough to fall down harder the next time. I felt alone and nothing soothed me.

By pure coincidence, eighteen and nineteen were significant on October 22 instead of September 30. On October 22, 2008, the 18th anniversary of my Shepherd rehab admission, I successfully defended my Master’s thesis on disability and sexuality issues, a goal I still cannot believe I attained. Then, on the 19th anniversary of my Shepherd admission, I spoke to a college class for the umteenth time about my life pre- and post-paralysis. They were empowering anniversaries, dates significant because of my disability, and dates symbolizing my life lived in tune with, in concert with, in harmony with, in celebration of disability and who it has made me and how I grow with and do good because of my disability.

Now year twenty feels different. Disability has changed me and is part of my every breath and my heart, soul, and whole being. This anniversary is one I could have never imagined. The word I keep seeing is possible. It feels possible to be me. It feels possible to come out of year seventeen and everything before and after it and feel good, feel empowered and full of life and love. It feels possible to dream, and my dreams are coming true. It feels possible to advocate for myself and others, to be a voice of reason and calm when things seem horrible. It feels possible to tell the naysayers I come across in the medical field to listen to me, that I am in charge of my body, and I know my body better than they ever will. My fears and anger at the system persist, but my success in the face of near impossibility temper those fears and that anger enough to keep me going most of the time.

I have always been intensely aware of my body, pre- and post-disability. My awareness of my post-disability body is far more nuanced and mature. The past twenty years have been filled with new presentations of my body to new people. Sometimes I catch myself and remember that I am the one who is not like the others, but most of the time I zoom around with an average amount of confidence. The past few weeks sitting in front of my class and zooming around campus have reawakened a more intense awareness of my post-disability body. I caught a glimpse of myself in a mirror the other day before class and remembered those things, those markers of halted development from my flat chest to the curvature that remains amidst the metal rods in my back, that I have taken for granted as normal for me but abnormal to new folks. I realized that class after class I present a disabled person to a small sea of faces pointed toward me. I talk about examples of disability and my own life when illustrating points. I realized how far I have come and how far we have all come. I realized how raw it still feels sometimes to be different.

I have told “my story,” as most people like to call it, many times to classes or groups when I do a presentation on disability awareness. The human service worker and sociologist in me likes to disclose my social location. I give the short version because that is all most people really need or can digest at a time. It was all I really kept in my own mind, heart, and soul for many years. Until two or three years ago, that is. I was “rehearsing” for one of my talks and slowed down for a moment. I moved from my point of view and visited what might have been my parents’ points of view in a way I could not have done previously. I was humbled. What could they have truly thought and felt during those first few moments and then during those first few months and years? How would I have felt if I had been them? What about my little brothers? Twenty years allow for these sorts of perspectives.

Twenty has not been my only significant number this year. I turned 30 earlier this year, and I have been living in Marietta for 15 years now, having spent half of my life here and the other half of it in Savannah. I finally won my battle with weight after twenty years of gut wars, a feat everyone thought impossible and for which no one had a winning plan of attack until now.

When I was much younger, I could never have imagined my life the way it has unfolded. Never. I only had my family, friends, books, and television as guides. None could have predicted a disabled life or shown me how to live well with disability before we had to learn together. But we have learned. Well, television has a ways to go, but my family, friends, some books, and I have made tremendous strides.

My family does not generally mention my anniversaries; maybe they don’t always remember. In fact, my dad and grandma still say, “when Laura got sick,” taking a largely medicalized view as is typical of their generations. That’s okay. I know what twenty years means to me. Twenty years of self-discovery, battles, fears, joy, embraces, incredibly significant people, and love.

Fever’s charm

Last Wednesday evening I wasn’t feeling great, thought I was just tired from working hard for several days.  As I got ready to go to bed though, I noticed that the tiny aches I had all day were now accompanied by the feeling of a fever.  I checked, and sure enough, it was 99.7 degrees.  I’m usually below the normal 98.6, so this was confirmation that something was awry.  I had no other symptoms though.  Only the oncoming chills and other joys of fever.  My mother, in her infinite wisdom, suggested it was probably a urinary tract infection.  My own brain was burning up and could not process such a simple cause of fever.  I grabbed some Tylenol and was on my way to shivering under my hugging covers.  It was the first of a few nights plagued by fever dreams.

The next morning was no better, temp up to 101.  But, no doctor’s appointments available until Friday at 10:45.  A little backstory on the doctors.  When we moved here in 1995, we used a family practice nearby and saw Dr. C.  In 2002, that practice stopped taking the insurance we used.  We found another family doctor, Dr. R, not far from Dr. C’s practice. Things went relatively well until Dr. R retired and moved away in January.  Sometime before that, Dr. C joined Dr. R’s practice, so we planned to see Dr. C again after Dr. R retired.  Bing, bang, boom.  Another doc, Dr. E. R. did join the practice when Dr. R retired, so there are two docs still in the practice.  Got it?  Good.  Well, Dr. C had no appointments for Friday, and Dr. E.R. was out of town, BUT she had a fill-in doc for her, so I would see her.  Not a real problem, since I had not met Dr. E. R. either because I had only planned to go to Dr. C, but new doctors are really annoying for veteran crips, gimps, and/or generally unwell folks.  At least they are for me, and I’ll bet I’m not alone.

So, why are new docs so annoying for us veteran gimps?  Well, let me use Friday’s appointment as an shining example.  First the computers were down.  Where are we anymore without computers?  Apparently far from knowledgeable about how to interact with patients.  More about that in a moment.  I gave my urine sample to the nurse and she got my info.  My 102.5 fever from 7:15am was down to 97.9 by the time of my appointment.  Got to love the Tylenol.  No major symptoms otherwise, at least none that I was able to sense given that most of my sensation stops just below my chest.  If there is pain, it’s got to be big time.

Fill-in doc comes in.  She’s shorter, tiny, maybe 40s, Middle Eastern.  She scans the room to decide whether my mom or I am am the patient.  I say I’m Laura and she proceeds to squint her eyes at the paper where my last name is scribbled so that she cannot read it.  She asks my mom to read it and we realize her confusion and tell her our last name.  Whew, good to go.  She introduced herself, I think, but I still can’t remember her name.  We’ll call her Nervous Nellie.  With the computers still down, she knows nothing about me, but mainly asks about my symptoms – if I have any pain, headaches, etc.  I explain that I would not likely feel any pain in my back, etc., but that I have not had any headaches. She notices  that my fever has gone down.  Yes, I took the miracle drug, Tylenol.  Ah, she acknowledges.  She finally states that the sample does show bacteria, an infection.  Nervous Nellie is tentative.  She wonders why I have an infection.  How do I catheterize?  I inform her that I do intermittent catheterizations, that about 12 years ago I had surgery that enlarged and rerouted my bladder and that I cath through a small opening, or stoma, just below my navel.  Nellie says, “Oh, so you don’t wear a bag or anything?”  Nope, sure don’t.  Then she asks if I use sterile catheters.  Yep, sure do.  I’ve been catheterizing for almost 20 years, I keep things very clean, but almost 20 years of cathing will invite a few critters now and again.  It’s par for the crip course, and common knowledge among the medical crowd I might add.  Now, my super duper bladder surgery is not that common in the medical crowd, but it has made my life so much better and has cut way down on infections.  I can catheterize independently while in my chair and you can imagine the freedom that affords.

Nellie then suggests that maybe I should cath more frequently.  Eh, maybe.  I’m so vigilant about my care, people.  Really.  I’m one of those people who actually drinks the requisite number of glasses of water EVERY SINGLE DAY.  It’s sickening to be around me sometimes.  Well, I keep myself company pretty well, but ya know.  So, I kindly agree that maybe an extra cath would help.  She wants to palpate around my bladder.  Sure, why not?  She touches me more gently than any doc has probably ever done, just barely palpates, all confused by a scar here or there and I explain.  She never actually felt anything more than the surface skin.  I know palpating and this was not it.  She was so scared.  Poor thing.  I really was nice, I promise.  After twenty years of folks poking and prodding me, I almost have a welcome sign printed on my forehead: “Come on down, you’re the next contestant on ‘Check out Laura’s Bod!'”  Truly, very little is sacred, you get used to it.

Then we talk about the antibiotic.  There are three antibiotics I’d prefer not to take because my stomach hates them and then I hate life.  I tell her and we agree on a different one.  Then I update my medications.  Now, I am only on five medications regularly and one of them is temporary.  But I hate listing them to some docs.  They judge, I know they do.  I love my regular docs.  They know me and they know why I do what I do and when and how and any other combination.  They know I am intelligent, capable, responsible, and truly do what’s best for me as much as possible.  They know disability and they know me.  They know that disability and I make a good match.  Disability and I are friends; we have an intimate bond and we work together and against each other, depending on the year, month, week, day, and sometimes minute.  It’s life.  People, even docs, who really know me know this.  Strangers have no conception of how this could work.

Finally, we recap.  Plenty of fluids, more frequent caths, Tylenol for a day or two more only, call if it doesn’t get better.  Cool.  She’s written the prescription and we are ready to get going.  Then, BAM.  She says, “What’s your history?  Was it an accident?”  Seriously, people.  I think I should write a grant application for a public service announcement on how to ask crips why we’re crips.  If even doctors can’t figure it out, we have some work to do.  I tell her, “no, it was transverse myelitis.”  She says, “Oh,” or something like that.  She appeared to know what transverse myelitis (TM) is, and I did not explain.  I used to have to explain to medical professionals.  Now more of them know TM.  But here’s the deal, good people.  I know I present as someone who has a spinal cord injury (SCI).  TM and SCIs are similar in their outcomes.  But of all people medical professionals should not assume I have an SCI.  They know there are any number of reasons people can be wheelchair users.  But that handy dandy computer wasn’t working.  I was all charmed out by this point.  Had she asked for my history at the beginning of the exam, I would have been in a better frame of mind about the whole thing, but I was ready to go home and feel better (or cath a few more times), not satisfy her curiosity.

I am indeed feeling better now and have had a fun story to tell.  But I get tired of explaining sometimes, especially when I’m sick.  Meet me halfway.  Assume I have knowledge about my body.  I have a degree in human services and one in sociology and then I’ve got a Ph.D. in being Laura Overstreet.  Meet me there and we will get along.  Even if you don’t know any of that, assume that I’m competent about myself until I prove otherwise.  I promise your patients will love you more.

Two important points.  First, I was interviewed for New Mobility magazine’s cover story on the 20th anniversary of the Americans with Disabilities Act (ADA).  Check it out here!  Second, I’m taking a short blog hiatus to prepare for the class I’m teaching starting next month.  Talk to ya soon!